About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, April 14, 2012

Hi Family and Friends! How are you? Well, you can probably guess what I mean - yup, another bleed. Don't know how much more of this I can take! I was @ work Friday, I had clocked out for lunch and was just reading my book since I haven't had much of an appetite lately. I was a little chilly, so decided to go sit right outside the back door to thaw out a bit. I hadn't been there but a few minutes, when I sneezed, and next thing you know I could feel the trickle of blood coming down my chin! I quickly stood up and headed for the bathroom. My friend Diana and the other officer that helped w/my bleed last time, Della, were both off and there didn't seem to be anyone around! This was during the latter part of the lunch hour. Finally, another female officer came in the bathroom and I asked her to please get my supervisor Zan. She took off right away and next thing I know I could hear running footsteps down the hall! Zan got to me quickly - fortunately this bleed wasn't as bad as the last one! Zan offered to get me a chair, but I was ok. Another officer, Audrey, had peeked in and she asked if they should call Mark. Told her my phone was in my pocket and she got it and Zan got Mark to come by and pick me up. Since he had to go back to work, he dropped me off @ Moms so I wouldn't be home alone. Mom gave me something to change into and get out of my bloody polo shirt, and I tried removing the paper towel I had packed the left side of my mouth with. Started bleeding again - darn! Makes me so angry! I sat back down in the living room and read a while. At this point, I had only had a little orange juice, some coffee and very little of a danish in the morning and I knew there was no way I would be having any lunch. Mom kept me company and I had my mouth packed until about 4:30 pm when I couldn't take it anymore! Mom came with me to the bathroom as I removed the paper towel - the bleeding had stopped! Whew! I rinsed my mouth and was wanting to brush my teeth, but that would have to wait until I got home. I use a child size toothbrush since I can't open my mouth too wide right now.Mark came to pick me up and we went to get my car I had left @ my job and then drove home. Mark heated up some chicken and stars soup for me and I ate a little of that. Later that evening, he made up a nice baked potato and I ate maybe half of it.My blood pressure has been low, so I haven't taken my hbp pills in almost a week - per my PCP. I need to find my bp monitor today - it's lost in the abyss of our home.I can't remember whether I mentioned in the previous blog entry that I had gone to see my PCP on Monday, since I had a bleed Easter Sunday night - to get some lab work and check my hemoglobin level. It was fine, and I don't think I lost that much blood on Friday, so I should be ok. So many things to worry about - this avm can just go off at any time, but I'm afraid to brush my teeth and I always follow that up with some oral rinse prescribed by my dentist, so that will kill any bacteria in my mouth. I worry about having bad breath, but it's hard to get in there with my whole avm situation.Mark has to work on Sunday, so I'll have to find someone to "babysit me" in case (heaven forbid) I have a bleed, I won't be alone!So there you have another chapter of my life. Very upsetting. Not fair to my babies that I can't be home with them on Sunday. I just want to rest and afraid of going anywhere in case of bleeding! On the other hand, I can't live in fear all the time - but I get a little reclusive especially after a bleed. My next embolization appt. isn't until the second week of May, so I'll have to wait until then to get Dr. Yakes to work on me. He is out of the country until the 18th of this month - probably teaching other doctors how to do what he doees!Ok everyone - enough downers! On a happy note, Celia got me an early birthday gift - a Barnes & Noble gift card! Yay! I get to buy more Nook books! I am currently reading The Garner Files by James Garner. I had gotten that book for mom for her birthday, so she just passed it on to me! I had a co-worker lend me a book called Lost & Found and one of the main characters in the book is a black Lab named Cooper - it was pretty good and I hear the sequel called Picture This will be out next month! Ok, I need to go pay attention to my furry kids! Hanz has already been over here once trying to get me off the computer! Take care all, and thanks for keeping up with me!Love,Cyndi, Mark, Hanz and Bella!

Friday, April 6, 2012

Hi Everyone! Well, I'm hoping all of you are doing well these days. Seems lately I've been called to educate people about avm's. I was having a great day, Friday, March 30 - I had gone to wound care in the morning and had gotten my culture results, which were surprisingly negative! That would mean I wouldn't have to have any more IV antibiotics and the Nurses on Wheels could remove access to my mediport! Now I can take a shower w/out having to cover the mediport site w/a clear plastic sheet called Aqua Guard!

I had texted my sister Celia, called Mom and of course my husband Mark about the culture results to share the good news. I've been on IV antibiotics since January it seems, because I still have an open wound from a past embolization on the left side of my face. It is healing nicely thanks to all the work the wound care techs do to keep it clean!

Every Friday afternoon where I work, one member of the Social Committee makes popcorn for the entire department ... so I had just gotten my bag of popcorn and had sat down @ my desk w/my soda to enjoy it ... when I felt my mouth start filling up with blood. I rushed to the bathroom down the hall and started grabbing paper towels to try and pack my mouth! The blood was coming out of the inside of my mouth (on the left side of course) somewhere between my lower gums and the inside of my cheek. I was hoping to pack my mouth where I could get the bleeding stopped, but I could tell as the blood was pouring through the fingers in my hand that I was going to need help! I started by calling my co-worker/friend Diana on my cell phone, whose office is around the corner from where I was. Of course she didn't answer - she has a love/hate relationship w/her cell phone. Half the time she loses it or leaves it in her car. I finally opened the bathroom door and luckily, another officer, Audrey, saw me and I asked her to please get Diana! Diana came right away, I told her where she could find some rubber gloves in my work area and she ran and got those and brought me a chair to sit in. I was losing so much blood so fast, that I turned white and was very weak! I kept trying to clean away the clots of blood out of the sink, but that was making me want to throw up! Diana called Mark to come help, and he showed up right away. By this time, another fellow officer, Della (wearing red polo in work photo), joined Diana in helping me out! I was just leaning over the sink and letting it run it's course because there was just no stopping it! It was definitely the worst bleed I have had! Finally when it stopped, the chair I was sitting on was an office chair, so I was rolled down the hall and toward the back door. Mark had parked back there and was going to try and get me to the hospital. By this time, my supervisor Zan (wearing sleeveless top and black skirt in work photo) and our HR person, Sylvia were all there trying to help. I felt soooo horrible, I just kept saying, "I just want to die". I heard someone ask Mark if I went to church and he replied, "when she can" - in other words, if I feel well enough or am not bleeding! It had been Della and I guess she was concerned that I kept saying I just wanted to die! I was sooo miserable and covered in blood and very weak! At this time, Zan and Sylvia were also around my chair, trying to hand me paper towels to wipe my hands or face. Mark tried getting me to stand up and walk a few steps outside to through the back door. As soon as I was outside, I just leaned over and threw up all over the place! Out came the tuna and fritos I had for lunch - poor Mark was still holding on to my hands and had to try and step back and avoid getting full of what was coming out of my mouth! UGH! I told him I needed to get back inside, into the airconditioning - the outside air was just not making me feel any better. Sat back down in the chair and I remember hearing my supervisor Zan asking that I be rolled back to where there was an open door (in one of the classrooms) where she knew the aircondition would be flowing and it was - making me feel a little better. I told Zan I was sorry about what happened, I felt bad about the mess I made - but she just told me not to worry about it! Zan has only been my supervisor for a short time, but she is sooo easy to get along with! She is always upbeat and answers all my e-mails in a very positive way with little smiley faces! She is the best - makes it easy for me when I have to show up late due to wound care or leave early for a doctor appt. or anything I need - Zan is very approachable and extremely helpful!

Mark by this time knew he couldn't get me to the hospital on his own in his car, so he called an ambulance. They showed up right away, put me on a bed and wheeled me out the front door! As much as I dislike being in the hospital, I was actually looking forward to getting there - knowing I would be helped in getting back to feeling better. The EMT's asked me a lot of questions, they got me started on an IV, hooked up to my mediport. Ironically, I had scheduled the Nurses on Wheels to come in and remove the access to my mediport that afternoon! They called while I was in the bathroom bleeding and Sylvia, our HR person took the call - she asked what I wanted to tell them and I told her to cancel their visit.

Once I was finally taken to the emergency room @ Dr.'s Regional Hospital (conveniently located several blocks from home) one of the nurses started cleaning up my hands and asked if I wanted her to cut my clothes off because I was too weak to get out of them myself! I told her no - those are my work clothes! Mark was wearing his navy blue pants and t-shirt from work, so the nurse thought he was one of the EMT's that brought me in the ambulance! She kept giving him a strange look because he was answering most of the questions she was asking me! I told Susan he was my husband and that's when we realized they thought he was one of the EMT's! Soon as I started getting some fluids pumped into me, I started feeling a bit better.

By this time, mom had come to the emergency room and stayed with me a bit while Mark went home to feed our kiddos and walk them.

I was taken for a CT Scan of my AVM, which meant one nurse had to stick me for an IV on my left hand where the dye for the CT Scan would go in. The nurses explained that I needed to keep that site in, just in case I was getting a blood transfusion to my mediport, but might still need to get other fluids in me quickly. Let me just say that the nurse that stuck me for the IV in my hand - OUCH! Yikes that one hurt! Poopie! There have been times I've been stuck for an IV and barely feel it, but I sure felt this one!

It was freezing in the emergency room, so I was really looking forward to being put in a room! The doctor on call was the same one on call when I was in the hospital during Christmas - Dr. Dodson is the one that said I needed a hospital bed @ home - that has been awesome! So he came in to see me and said I would be taken to ICU so I could be closely watched in case there was anymore bleeding. I want to say I was in ER until about 11pm when I was finally taken to ICU. The worst thing about being in that area, was having to use a bedside toilet. UGH! I told one of the nurses that it was probably the worst part of their job, having to clean that up! None of them seemed to mind - in fact, everyone was really great and took fantastic care of me! The first 2 nights I was kept in ICU and I made the best of it by just resting, reading and watching TV! I'm such a big nerd and was super excited that the first two original Star Wars movies were on TV! I was telling some of the nurses how for Davis' 6th or 7th birthday, Celia dressed up like Princess Lea, Greg like Luke Skywalker and my Mark was Darth Vadar because he is so tall! Celia had the soundtrack to the movie and played the Darth Vadar music (now, moms ringtone, ha, ha!) as Mark walked in to the party. He went over to one of the kids and said, "Come with me to the 'dark side'" and the kid right away goes, "Okay"! Mark told him, "You're not supposed to say that"!

Ok, back to the story @ hand - while I was still in ICU, Celia called me - she and Greg had gone to Houston to see Greg's brother Mike who is an astronaut! So I spoke w/Celia a bit, then Greg got on the phone, then Mike did! It had been a while since I'd had a chance to speak to him (probably the last time was when Mike spoke to the Boy Scouts when Davis made Eagle Scout!), so that was really great!

I was feeling like I was just taking up space in ICU, and kept asking when I would be put in a regular room or better yet, dismissed! My ENT, Dr. Zane came by (see photo from a couple years back) and we have what seems to be a running joke when we see each other. Both of us have Brussels Griffons for pets, so we both whip out our cell phones to compare pictures! He and his wife have one his wife takes everywhere - mom saw them @ Best Buy during the holidays last year and Mrs. Zane had her Brussels dressed in a pretty sweater and pearls! Dr. Zane has a couple of daughters and each has a Brussels, sisters to the one he and his wife own! He's got the cutest picture of the three female Brussels all with pink bows in their hair! I need to get Bella used to wearing bows when I get a chance to take her to Petsmart! Everyone loves Hanz and Bella @ Petsmart - they usually draw an audience - what can I say, I have the cutest kids in the world! :)

I was feeling so much better after getting 2 units of blood, some IV fluids that included potassium (since that was still low), that I asked Dr. Dodson when I would be dismissed! That was Sunday - and he said that my hemoglobin level was still too low - should I have another bleed, I maybe in danger of bleeding to death. Alrighty then! Much as I wanted to go home to my babies, I knew it was necessary for me to stay put! Darn it I wanted to go home and watch the Country Music Awards @ home! So of course like 15 minutes before the show starts, the nurse comes to take me to a regular room! Got settled in pretty quick and enjoyed the show.

Again, spent more time handing out my blog address and Shalon's so that the nurses could read up on avm's. A doctor can go his whole practice and not see an avm patient - that's how rare avm's are.

I got one more unit of blood and I finally got released early Monday evening and I was so ready! It was so great to see my babies! (see picture of Bella w/her favorite Dragon toy that has like 16 pockets that have that squeaky noise thing in it)! Hanz sat next to me on the couch all evening and then slept with me most of the night! They both alternate between where Mark and I each sleep - right now I'm in our bedroom in my hospital bed and Mark has been sleeping on the couch! He doesn't like the loud noise my humidifier/compressor thing makes that I have to sleep with attached to my trache. Plus, I would wake up in the middle of the night, and the dogs would get up and Mark wasn't getting a full nights sleep that he needs to function @ work! The only reason I can function @ work, is most of the time I'm on steroids! I've gotten off of them as quickly as I can though - too many side effects! Unfortunately, one of the pills I take for pain makes me very drowsy, and since I sit @ a computer all day, it's sometimes tough to stay alert!

I returned to work the day after getting out of the hospital! Mom took a basket of flowers to my friend Diana that has always helped with my bleeds! I'm surprised she's brave enough to invite me to lunch, as I've had a couple of bleeds while we're out eating! I wrote some thank you notes to several people @ work for helping me when I was so sick! Della said she would help me anytime I needed her. Wow! After the horrible, bloody mess, I'm shocked anyone would come near me again! I went to the Community Service Department to thank them for cleaning up the mess I made - they were so sweet to tell me it was not a problem! I was wondering whether I would be let back in after what had happened!

One of the side effects from so many pain pills, is the weakening of some of my leg muscles. Hard to be on my feet, I sometimes feel I can't support my weight. Going up stairs is hard, so I always go up a ramp if I can. Stepping down isn't as bad. Every day I lugg around my "what if" bag as Mark calls it. It is actually for carrying around scrapbooking supplies, but it has lasted me longer than any of those crate looking things on wheels you get @ Office Depot! I've already gone through 4 of those! In any case, when I'm on steroids, I'm super hungery, so I fill that with snacks, plus my meds, any reading material - in other words, any comfort of home I can think of! When someone asks me why I bring that to work everyday, I tell them that since my whole AVM experience is so bad, I try to bring whatever I can to make my life easier while I 'm @ work! Makes sense, right?

Unfortunately, I had another bleed Sunday night. We had celebrated a fun Easter brunch @ moms, and hadn't been home 30 minutes when this happened. It wasn't as bad as the one March 30, but not a trickle either! One of the wound care techs had told me she had learned of a way to get some bleeding stopped. She suggested I put on a rubber glove and place pressure where the bleeding was coming from. It worked! That's what finally got the bleeding stopped. The bleed I had @ work was just too much @ once - don't know that it would have helped then.

Anyway - I just want to share what my life is like these days. My days are work/home/dogs. Don't go very far from home - maybe the grocery store once in a while since we live 3 blocks away! Once in a blue moon I may drag myself out to Petsmart to go w/Mark and the kiddos. This whole process is difficult for people to understand. They know I go for procedures, but I always look the same or worse! I tell them that until this avm is completely gone, I probably won't look much better. I just want the bleeds to stop! I'm sure some think that I go have a procedure, come home and have a normal life and then go have another procedure. Nope! Every time I have an embolization, I'm very swollen - usually my left eye is swollen shut for a few days. I take pain pills, steroids and hope for no bleeds until the next embolization! I just can't function like I used to - I just dream of the day it's all over and I can be who I used to be! I want to sleep on my side and not sitting up @ a 45 degree angle. I want to wear makeup and have a Mark-a-rita (can't right now w/all the meds)! Were it not for our faith, we could not have gotten this far. Mark does so, so much! He is an excellent care-giver, even though I know it causes him a lot of stress! When I run into someone that asks me about my avm, they can't believe I have such a good outlook, but I tell them how blessed I am to have all of you with me on this journey!

I thank all of you for all your love, prayer and support. Could not manage without all of you, my wonderful husband and our families that help us so much! My Hanz and Bella make me happy and keep me entertained, so it takes my mind off the avm. They give unconditional love!

Wishing you good health! Take Care!

Cyndi

P.S. That one photo of me in the red nightgown was a few years back, but that is how I used to wake up sometimes, having a bleed during the night!